EoI #-
Date Received-
ALSWH State-Based Data Linkage Variable Request form
The Australian Longitudinal Study on Women’s Health (ALSWH) has access to Cancer Registry, Perinatal and
Admitted Patients datasets from NSW, QLD, WA, SA, ACT and VIC (Cancer registry only) for ALSWH participants. In
general, these datasets are updated annually to ensure researchers have access to current data. However, there are
a number of caveats that need to be noted by any researcher using these datasets.
Data Sets Available
All external data sets that have been linked with the ALSWH study begin at different time periods and continue until
the most recent calendar year (See table below for earliest year available).
NSW
QLD
First Year Available
WA
VIC
SA
ACT
Cancer Registry
1994
1982
1982
1982
July 2003
1994
Perinatal Data
1994
July 2002
1980
NA
NA
1997
Admitted Patients
2000
July 2002
1970
NA
July 2003
July 2004
Availability
The linked data sets are not as freely available as the ALSWH data. There are strict guidelines for their use. In
particular, anyone seeking to access these data sets will need to obtain approval from the data custodian of the
requested data set and, in some cases, an ethics committee. When external approval is needed, ALSWH will
endeavour to gain approval on behalf of the requested investigator. In this instance, a fee may be charged.
Each prospective data user is required to specify and justify which records and fields are required. See the ALSWH
website (www.alswh.org.au) for further information about the policy on accessing data.
Access to Data
Analyses on external linked datasets may only be conducted at the University of Queensland, the University of
Newcastle or through the SURE facility at the Sax Institute https://www.saxinstitute.org.au/our-work/sure/ . If
external researchers wish to include external linked data in analyses, they may opt for one of the following:
•
•
•
The researcher may conduct analyses on site at either the University of Queensland or the University of
Newcastle. This option is dependent on the availability of facilities and resources at the time of request.
ALSWH will provide an experienced statistician to conduct analyses on behalf of the researcher. This option
will involve a cost recovery that will be negotiated on a case by case basis, based on the complexity of work
involved. It is also dependent on the availability of resources.
Researchers may opt to use the SURE facility. If this option is chosen, researchers are responsible for any
costs imposed by SURE to access the data.
ALSWH Contact Person
These data have a number of unique characteristics and a user must talk to an ALSWH staff member who is
knowledgeable about the data as misunderstanding the data could easily occur. For example, the meaning of some
1
EoI #-
Date Received-
fields may not be clear and some information may not be included in the data. A new user may first be required to
navigate around a mock up data file before accessing the true file.
Projects will not be approved unless the ALSWH Publications Substudies and Analyses (PSA) Committee and the
ALSWH Data Linkage Committee (DLC) are assured that the prospective user understands how to use these datasets
appropriately.
2
EoI #-
Date Received-
The variables listed below are specific to each data set in each state. The lists of variables available are different
across states. Please indicate the variable(s) requested for each state(s) and provide sufficient justification for their
inclusion in your study. To prevent potential delay, it is strongly recommended applicants spend time to provide
sufficient justification for all requested variables before submitting an application as the release of variables will not
be considered unless sufficient justification has been provided.
1973-78 Cohort 1946-51 Cohort 1921-26 Cohort
☐
☐
☐
1. CANCER REGISTRY DATA
NSW Cancer Registry- Variable Checklist
Variable
☐
Age at diagnosis (years)
☐
Date of diagnosis
☐
Cancer type
☐
ICD- 0-3 topography code
☐
ICD- 0-3 morphology code
☐
Best basis of diagnosis
☐
Degree of spread
☐
Date of death
☐
ICD- 0-3 cause of death
Justification
QLD Cancer Registry- Variable Checklist
Variable
☐
Date of diagnosis
☐
Site of cancer
☐
Differentiation
☐
Morphology
☐
Basis of diagnosis
☐
Date of death
☐
ICD-O cause of death
Justification
For Breast Cancer:
☐
Tumour size
☐
Number of nodes
☐
Number of positive nodes
☐
Laterality
3
EoI #-
Date Received-
☐
Nodal status complete
☐
Size complete
For Melanoma:
☐
Thickness of lesion
WA Cancer Registry- Variable Checklist
Variable
☐
Date of death
☐
Cause of death
☐
☐
Justification
Pathology record
sequence number
Tumour site/topography
code
☐
Tumour morphology
☐
Tumour behaviour
☐
Basis of diagnosis
☐
Tumour grade
☐
Date of diagnosis
☐
Postcode of residence at
diagnosis
☐
Fatality flag
☐
WACR cancer type code
☐
Cause of death type
☐
Pathology
☐
Tumour 'status' code
☐
Date validity
☐
Reliability code for
unusual code
combinations
VIC Cancer Registry- Variable Checklist
Variable
☐
Justification
Age at diagnosis
Tumour Demographics
☐
Primary Site (ICDO-3)
☐
Primary Site (ICD-10)
☐
Morphology (ICDO-3)
☐
Behaviour
4
EoI #-
Date Received-
☐
Grade
☐
Laterality
☐
Date of diagnosis
☐
Basis of diagnosis
☐
Size
☐
Melanoma level
☐
Melanoma thickness
☐
Nodes sampled
☐
Nodes positive
SA Cancer Registry- Variable Checklist
☐
Date of death
☐
Cause of death
☐
Date of diagnosis
☐
Primary site (ICD-0-3)
☐
Morphology (ICD-0-3)
☐
Behaviour
☐
Investigations
☐
Staging Information
ACT Cancer Registry- Variable Checklist
☐
Age of diagnosis (years)
☐
Date of diagnosis
☐
Cancer type
☐
Topography code (ICD-0-3)
☐
Morphology code (ICD-0-3)
☐
Best basis of diagnosis
☐
Degree of Spread
☐
Death of Date
☐
Cause of Death (ICD-0-3)
5
EoI #-
Date Received-
2. PERINATAL DATA
NSW Perinatal Data- Variable Checklist
Variable
☐
Mother’s age
☐
Mother’s marital status
☐
Baby’s date of birth
☐
Date of LMP
☐
Previous pregnancy > 20 weeks gestation?
☐
Number of previous pregnancies
☐
Was last birth by caesarean section?
☐
Total number of previous caesarean section
☐
CVS/Amniocentesis ( <20 weeks)
☐
Cervical suture
☐
Antenatal care
☐
Duration or pregnancy (weeks) at first
antenatal visit
☐
Smoking during pregnancy
☐
Maternal diabetes mellitus
☐
Gestational diabetes
☐
Chronic hypertension
☐
Pregnancy-induced hypertension
☐
☐
☐
☐
☐
☐
☐
Justification
Pregnancy-induced hypertensionproteinuric
Pregnancy-induced hypertension nonproteinuric
Prelabour rupture of membranes (>24
hours)
Labour onset
Induction and augmentation of labour by
other method
Main indication for induction/augmentation
of labour
Pain relief:
None
☐
Nitrous oxide
☐
IM narcotics
☐
Local to perineum
☐
Pudendal block
☐
Epidural/caudal block
☐
Spinal anaesthetic
6
EoI #-
Date Received-
☐
General anaesthetic
☐
Other
☐
Analgesia for
labour:
Nil
☐
Nitrous oxide
☐
Systemic opioids
☐
Spinal
☐
Epidural/caudal
☐
Combined spinal epidural
☐
General anaesthetic
☐
Other
☐
Epidural anaesthetic
☐
Type of delivery
☐
Baby’s sex
☐
Plurality of birth
☐
Birth weight
☐
APGAR score (1 min)
☐
APGAR score ( 5 min)
☐
Birth order
☐
Onset or Augmentation of labour
☐
Estimated gestational age
☐
Induction/Augmentation by oxtocics
☐
Induction/Augmentation byPGs
☐
Induction/Augmentation by ARM
☐
Delivery
QLD Perinatal Registry- Variable Checklist
Variable
☐
Mother’s date of admission
☐
Mother’s marital status
☐
Mother’s age
☐
Previously pregnant indicator
☐
Total number of previous pregnancies
☐
Last menstrual period
☐
Number of antenatal visits
☐
Number of previous caesareans
☐
Number of previous pregnancies resulting in
all live births
Justification
7
EoI #-
☐
☐
Date Received-
Number of previous pregnancies resulting in
all stillbirths
Number of previous pregnancies resulting in
all abortion/miscarriage/ectopic/hydatiform
moles
☐
Antenatal care flag
☐
Nuchal translucency ultrasound
☐
Morphology ultrasound
☐
Chronicity ultrasound
☐
☐
☐
☐
☐
☐
Average number of cigarettes smoked
Average number of cigarettes smoked per
day during the first 20 weeks of pregnancy
Average number of cigarettes smoked per
day after the first 20 weeks of pregnancy
Smoke status for the whole pregnancy
Cigarette smoking indicator during the first
20 weeks of pregnancy
Cigarette smoking indicator after the first 20
weeks of pregnancy
☐
Gestation at first antenatal visit
☐
Mother’s medical condition (ICD-10)
☐
Flag for pre-existing diabetes (1=yes)
☐
Pregnancy complications (ICD-10)
☐
Flag for gestational diabetes (1=yes)
☐
Flag for gestational hypertension (1=yes)
☐
Neonatal morbidities (ICD-10)
☐
Congenital anomalies (ICD-10)
Baby’s Birth Detail Record
☐
Birth plurality
☐
Birth order
☐
Onset of labour
☐
Primary reason for induction
☐
Methods of inducing labour or augmenting
labour after spontaneous onset
☐
Anaesthesia flag
☐
Method of birth
☐
Reason for caesarean
☐
Birth weight
☐
Gestation age completed weeks
☐
Birth status of baby
☐
Baby’s sex
8
EoI #-
Date Received-
☐
APGAR score at 1 minute
☐
APGAR score at 5 minutes
☐
Membranes rupture time
WA Midwives Notification System- Variable Checklist
Variable
Justification
Mother’s Details
☐
Marital status
☐
Height
Pregnancy Details
☐
Previous pregnancies
☐
Previous pregnancy outcomes
☐
Previous caesarean section
☐
Caesarean last delivery
☐
Previous multiple birth
☐
Date of last menstrual period
☐
Smoking during pregnancy
☐
Complications of pregnancy
☐
Medical conditions
☐
Procedures/treatments
Labour Details
☐
Onset of labour
☐
Augmentation
☐
Induction
☐
Analgesia (during labour)
Delivery Details
☐
Anaesthesia (during delivery)
☐
Complications of labour and delivery
Baby Details
☐
Date of birth
☐
Plurality
☐
Method of birth
☐
Gender
☐
Status of baby at birth
☐
Infant weight
☐
Length of baby (cms)
9
EoI #-
Date Received-
☐
Head circumference
☐
APGAR score at 1 minute
☐
APGAR score at 5 minutes
☐
Estimated gestation
ACT Perinatal Data Collection
☐
Mothers age
☐
Mother’s marital status
☐
Baby’s date of birth
☐
Date of LMP
☐
Previous pregnancies
☐
Number of previous pregnancies
☐
Was last birth by caesarean section?
☐
Total number of previous caesarean section
☐
Amniocentesis (<20 weeks)
☐
Amniocentesis (≥20 weeks)
☐
CVS
☐
Cervical suture
☐
Antenatal care providers
☐
Duration of pregnancy (weeks) at first
antenatal visit
☐
Smoking during pregnancy
☐
Gestational diabetes
☐
Chronic hypertension
☐
Pregnancy-induced hypertension
☐
Prelabour rupture of membranes (>24 hours)
☐
Labour onset
☐
Type of Induction
☐
Type of Augmentation
☐
Analgesia for labour
☐
Anaesthesia for delivery
☐
Type of Delivery
☐
Method of Birth
☐
Baby’s sex
☐
Plurality of birth
☐
Birth order
☐
Gestational age
10
EoI #-
Date Received-
☐
Birth weight
☐
APGAR score (1 min)
☐
APGAR score (5 min)
11
EoI #-
Date Received-
3.
ADMITTED PATIENTS DATA
NSW Admitted Patients Data
Variable
☐
Age
☐
Marital status
☐
Source of referral
☐
Date of admission
☐
Date of separation
☐
Length of stay
☐
Number of leave days
☐
Primary diagnosis
☐
Additional diagnosis
☐
External cause of injury or poisoning
☐
Activity when injured
☐
Place of occurrence
☐
Principal procedure
☐
Date of principal procedure
☐
Additional procedures
☐
Insurance status
☐
Health insurance on admission
☐
Episode start date
☐
Episode start time
☐
Episode end date
☐
Episode end time
☐
Clinical codeset
☐
Mode of separation
☐
Local Health District of hospital
☐
Days in a Designated Psychiatric Unit
☐
Payment status on separation
Major Diagnosis Category for
Australian Refined Diagnosis Related
Group
Australian Refined Diagnosis Related
Group
Australian Refined Diagnosis Related
Group version
☐
☐
☐
Justification
12
EoI #-
Date Received-
☐
Episode of care type
☐
Service related group
☐
Service related group version
QLD Hospital Admitted Patients Data
Variable
☐
Admission date
☐
Separation date
☐
Length of stay
☐
☐
Justification
Mode of separation (discharge status,
grouped)
Source of referral/transfer (admission
source)
☐
Hospital insurance status
☐
Funding source
☐
Care type
☐
Elective patient status
☐
ICD-10AM Principal diagnosis
☐
ICD-10AM Other diagnosis- up to 39
per episode
☐
ICD-10AM External cause
☐
ICD-10AM Morphology code
☐
☐
ICD-10AM Procedure code- up to 43
per episode
Date of procedure(s)- up to 33 per
episode
WA Hospital Morbidity Data
Patient Information
☐
Admission age
☐
Admission date
☐
Separation date
☐
Marital status
☐
Employment status
☐
Length of stay
☐
Source of referral:
location
☐
Source of referral:
professional
Only available on
data after July 2000
13
EoI #-
☐
☐
Date Received-
Source of referral:
transport
Source of referral
(Available on data prior to July 2000)
☐
Admission status
☐
Insurance status
☐
Care type
☐
Total leave days
☐
Number of leave periods
☐
Days of hospital in the home care
☐
Days in ICU
☐
Hours CVS
☐
Mode of separation
Diagnosis Codes
☐
Principal diagnosis
☐
Co-diagnosis
☐
Additional diagnoses
Procedure Codes
☐
Principal procedure
☐
Additional procedures
E-Codes
☐
External cause of injury
☐
Activity code
☐
Place of occurrence
South Australia Separations (Hospital)
☐
Admission category
☐
Admission date
☐
Admission type
☐
Separation type
☐
Principal diagnosis
☐
Additional diagnoses
☐
Episode of care
☐
External cause
☐
Hospital insurance
☐
Transfer to hospital
☐
Transfer from hospital
14
EoI #-
Date Received-
☐
Marital status
☐
Nature of separation
☐
Length of stay (days)
☐
Place of occurrence
☐
Procedure
☐
Referral further health care
☐
Separation date
☐
Source of referral
☐
Admission election
☐
Separation election
☐
Activity Category
☐
Date of Birth Category
ACT Admitted Patient Care (APC)
☐
Age
☐
Marital Status
☐
Date and time of admission
☐
Date and time of separation
☐
Length of stay (LOS)
☐
Number of leave days
☐
Day stay flag
☐
Primary diagnosis
☐
Additional diagnoses
☐
External cause of injury or poisoning
☐
Activity when injured
☐
Place of occurrence
☐
First procedure
☐
First procedure date
☐
Other procedures
☐
Admitted to psychiatry ward
☐
Days in a designated psychiatric unit
☐
Insurance status
☐
Major Diagnosis Category (MDC)
☐
Australian Refined Diagnosis Related Group
☐
Service Related Group
15
EoI #-
Date Received-
☐
Separation mode
Office Use Only
EOI No:
Date EOI approved:
Email address
__ /__ /___
Dataset created by:
Date dataset created:
__ /__ /___
16